Scared Partner

MIC_ZA

Hi everyone,

 I'm new to this site. Yesterday we found out that my boyfriend of 4.5 years has signet ring cell carcinoma. Started with severe stomach pains, less than 2 weeks ago, and the doctor thought it was appendicitis. He had an op to remove his appendix, but during the operation the surgeon found a large mass on his colon.

After CT scans, he went in for the second operation to remove the tumor on 8/2/2018. It was much larger than anticipated, but the doctor was happy with how the surgery went. Results came back from pathology yesterday, and this confirmed that it was signet cell carcinoma. Also, approximately 30 lymph nodes were removed during the surgery and a large percentage (the exact number escapes me now) were found to have these cancerous cells. He was diagnosed with stage 3 cancer. He is 28 years old.

After a lot of reading on the internet, I feel terrified, and confused as there is so much uncertainty around this type of cancer. He has been struggling with a fever which is now under control, but seems to have developed a bit of an infection. He will need to recover fully from the surgery before he can start chemo in a few weeks (treatment suggested is 6 months). He is extremely positive, and there has been a tremendous outpouring of love from his friends and family, who know what a kind, loving person he is.

 I wanted to ask survivors and/or other partners/parents/friends of a survivor:

- What are some of the things I can do to offer the best possible support? I try be very strong and positive when I'm with him, as I know it makes him incredibly sad when I'm sad/anxious/hurting. I am fortunate enough to be able to take time off work to be with him, so this is not a problem. In your experience, is it best to have your loved one come with to every chemo treatment (what I want to do) or is this too stressful for the person having the chemo?

- What foods are the best to eat at this time? What should be avoided?

- Terms I'm not familiar with: NEC - I've read this a lot - what does this mean? What does the term CEA mean?

 Thank you! 

OzarkGal

Hello

Take one day at a time.  Be sure to take some time out for yourself to re-group.  This isn't easy.  It is good that it was caught before it became stage 4.

They usually require a driver on the first chemo infusion because they don't know how the patient will react to the medications.  I had a friend go with me on the first infusion but I was able to drive myself for the other treatments.  The Benadryl tends to make people sleepy so he might sleep through most of it.  Ask him what he prefers.

Regarding diet, I would see if you can get a dietian who works with cancer patients.  In general, protein is important for healing after surgery and during chemo when the body needs to replace red and white blood cells (I am assuming that kidneys work OK here.)  Protein drinks are good but my onocologist said not to drink milk products on the day of infusion.  Also good to ask the onocologist.  During chemo, there can be periods of diarrhea and constipation.  My oncologist gave me a notebook indicating foods to avoid if one or the other.  Staying hydrated is also very important (especially if diarrhea),  Tastes can change during chemo (metallic taste is common).  Very important to try to keep weight stable.  My onocologist said to eat 6 small meals instead of 3 large meals.

CEA stands for carcinoembroynic antigen.  It is a compound that is secreated by some cancer tumors. For some people, it is a good marker.  For other people, it is not.  For me, it is a good marker (i.e. trends down when tumors are shrinking, goes up when tumors are growing).  A normal level is usually <=3 ng/ml.  CEA will tend to be much higher if there is a lot of tumor involvement in the liver.  But exactly what the tumors are doing should be confirmed by scans (MRIs, etc.)

plsletitrain

Support

Being a cancer patient subects to all forms of challenges.  Physical, emotional, mental.  As to the physical aspect, while on chemo I did not have appetite so I think as his partner, you should keep him to eat.  My husband sometimes had to literally feed me just to let me eat.  While on infusions, I preferred to just have one companion, which is my husband.  Sometimes the patient just wants to sleep or think to himself (as in my case) so having a lot of people around will probably make him feel uncomfortable as he still has to attend and talk to them.  Your partner might be very positive but there really comes a time when bad thoughts linger.  As what happened and still happens to me.  I'm trying to stay positive and strong but there are really times when you feel like where this is all leading to, and I'm lucky that my husband is there to give me emotional support.  Tell him that he can beat this, that cancer can be treated, and that there is hope.

You can ask for more questions as you go along.  This is very overwhelming not only to us patients but to our loved ones as well.

Trubrit

Hello and welcome to the forum

It always breaks my heart to read of young ones being diagnosed. But, on the other hand, age is a bonus in this fight. 

You ask some very good questions and friends above have given very good answers.  

I think you meant to ask what is NED. NED stands for No Evidence of Disease. These are the words we all want to hear when we are finished with treatment. 

My husband went with me to every chemo treatment. We had to travel a 330 mile round trip to get treatment because I live in rural USA.  I needed my husband. I would have been broed out of my skull without him. My infusions lasted upward of four hours (FOLFOX).  I was done in by the end of the day, and no way I could have driven home. When I had six weeks of radiatoin, I had to live up in the big city, luckily I had a friend who opened her home to me. 

Foods. I also was told to keep my weight up. I lost my appitite for days after treatment, and then ate whatever I could on my good days. I also suffered mouth sores and chronic heartburn, which didn't help. Plus, I got the sensation of a blockage in my sternum. It was all very unpleasant.  It is best to keep sugars, refined sugars to a minimum. Get sugars through natural foods. 

Keep positive while letting him know that you are worried. My children were too positive, and sometimes I think they didn't care. When you're physically and emotionally drained, your brain plays tricks on you. I knew they cared, yet they were so happy and joking, I doubted and thus, got a little discouraged at times. Be honest, but be positive. Such a balance, eh. 

We're all here to help you help your partner. Be good to yourself. 

Tru

JanJan63

I'm sorry you're here, he's

I'm sorry you're here, he's so young, but you've come to a good place. I like having my husband at my chemo sessions. Mine only takes half an hour but the few times I went alone I noticed how many people have company for them- even just friends- and I felt bad and a bit forlorn when I was alone. 

Your other questions have been answered so I won't address them. 

What I've found very helpful with the people who support me is if they just treat me the same. If I want to talk about it they're ready to listen but they don't act like they feel sorry for me, even though they do. If you need to cry or be sad, though, that's natural. There will be times when one or both of you will feel that way and you just need to work though it. The times that my husband annoyed me was when he'd say "well, at least you're alive" when I was having a hard time or feeling sorry for myself. I found it dismissive and unsympathetic. Finally, one day I erupted and screamed at him for it. I said that just because I have cancer it doesn't take away my right to want to feel good and have quality of life. I'm not wrong to want more than to just be alive. And I told him that I didn't want him to ever say it again. 

The best thing he does for me is just listens, even when I get really down in the dumps. He doesn't say he doesn't want to hear it or that I'm being dramatic, he just listens and gives me a hug when I'm done. Or he'll reiterate what I've said and tell me he understands and can't imagine what it's like for me. 

Being a caregiver is a tough, tough role. The fact that you've come on here and are asking the right questions indicates that you're on the right track. 

Hugs,

Jan

peterz54

Your diet question

I'll start with presentations by two oncologists who are basing their perspective on research (biological mechanisms, animal trials, small human trial, clinical experience, and gowing anectdotale experience).   Will post researcher presentations later, but they are in some of my other recent posts

Dr. Dawn Lemmane

https://www.youtube.com/watch?v=W_diITmOeCM

Dr. Colin Champ

https://www.youtube.com/watch?v=iO7Y6rE3UBw

The short answer is to get off of all simple carbs/sugars and excess starches.  And no excess protein or excess calories.  Mild calorie restriction might be helpful if he is overwieght or normal weight.